Holly K. Tabor, PhD and Aaron Goldenberg, PhD, MPH
Rare genetic disease research has something to teach precision medicine about addressing some patients’ limited access to treatment. Health disparities exacerbated by high costs and limited availability of drugs can, perhaps, be mitigated when patient activism accelerates drug development.
AMA J Ethics. 2018;20(9):E834-840. doi:
10.1001/amajethics.2018.834.
Rebekah Davis Reed, PhD, JD and Erik L. Antonsen, PhD, MD
Though the National Aeronautics and Space Administration’s collection of disaggregated genetic data for occupational surveillance and research raises numerous privacy concerns, the Genetic Information Nondiscrimination Act of 2008 allows genetic information to be used to develop personal pharmaceuticals.
AMA J Ethics. 2018;20(9):E849-856. doi:
10.1001/amajethics.2018.849.
The meaning of “disability” has shifted with US public policy changes over time. People with disability are protected under civil rights law, and open questions remain about whether and when policy-level interventions and reasonable accommodations create equal opportunity.
AMA J Ethics. 2016;18(10):1025-1033. doi:
10.1001/journalofethics.2016.18.10.pfor2-1610.
Cytopathologists frequently interact directly with patients at their bedsides to perform fine needle aspiration procedures. When, if ever, should cytopathologists share preliminary diagnostic impressions directly with patients?
AMA J Ethics. 2016;18(8):779-785. doi:
10.1001/journalofethics.2016.18.8.ecas3-1608.
Rachel A. Mills, MS, Susanne B. Haga, PhD, and Geoffrey S. Ginsburg, MD, PhD
Clinical utility is a test’s contribution to health outcomes, while personal utility considers the psychosocial and lifestyle effects and the value of the information to the patient.
Requirements for informed consent are relatively vague and the exceptions are few, so it is in the physician’s best interest to inform patients about proposed treatment options, ascertain that they understand their choices, and secure their consent.
Chromosomal microarray analysis reveals many gene variants of unknown significance. The uncertainty about these variants—might they be deleterious or are they benign?—complicates genetic counseling.